On the whole the last 3 days have gone very well. We have gone from Noah wearing his helmet a few hours and then off again, to being on 23 hours a day - today was his first full day.
On Friday, Noah wore his helmet during a nap for the first time. He had no problem at all and fell asleep in the usual way. The next nap time fell on a break, so he didn’t wear it then. Overall he had it on for a good length of time during the day wearing his helmet and we felt confident to let him sleep in it for the night (as suggested by day 3). He did brilliantly. We heard a few squeals from him as we went to bed, I think we might have disturbed him, but after checking his covers and making him a little warmer, he slept soundly for the rest of the night.
So on Saturday morning, we were able to take his helmet off for an hour to give him a rest, as we are still in the process of building him up. We gave his head a good check over and found two red patches on the left of his head (over his ear), and one to the back of his head, each about the size of a 1p piece. So we kept an eye on them and in the end kept his helmet off for a few hours as the one on the back of his head took a long time to fade. Eventually when we were happy, we put lots of Sudocrem on the patches that had been red (as suggested) and also around his forehead and cheeks. Where we had been using Vaseline previously on his face, he looked like he was getting some pimples, so we have switched as maybe the Sudocrem is a little more breathable?
His helmet then went back on and stayed on until bath time. We had a lovely bath time on Saturday night, Noah is loving holding onto the side of the bath now and tries to pull himself up. So cute. We had lots of giggles as we played for about 20 minutes. After this time, we got him dressed, put lots of Sudocrem on again and then tried to get his helmet on. I don’t know quite what happened but I found it really hard and the first attempt went wrong, So we took it off and tried again. Poor Noah, he screamed so loudly and got very upset. It broke my heart. It is bad enough if he cries when he bumps his head, let alone to think that we were doing this to him. I ended up in floods of tears, so much so that Liam (my husband) took over, got his helmet on and took him to his room for milk. I was so glad he was there to do that as I don’t want Noah to see me getting upset about his helmet. I don’t want him to pick up on that as it just won’t help him. Once I had composed myself, I went and said good night. He was smiling away, and as always looked very comfortable in his helmet - it made me feel happier to see his grin.
It really is tricky getting his helmet on, you have to line up the front first, before getting it over the back of his head and into final position. On Saturday I was really struggling to get it around the back right side of his head, the area that is bigger. It is quite tough to pull the helmet open enough and Noah is constantly moving about (even sat in his Bumbo), it is a very tricky thing to do. I know it will get easier as Rachel at the clinic did it with ease!! We just have to keep going.
Again, he had a brilliant night in it - no squeals at all! So this morning, he had about a 20 minute break whilst Liam cleaned it and then wore it all day (including both naps) until bedtime. Today was his first full day. He seemed to be back to his old self. Chatty, smiley and shouty! He seemed less subdued, even though he is still very dribbly. He seems to be completely used to wearing it now.
On Friday, Noah wore his helmet during a nap for the first time. He had no problem at all and fell asleep in the usual way. The next nap time fell on a break, so he didn’t wear it then. Overall he had it on for a good length of time during the day wearing his helmet and we felt confident to let him sleep in it for the night (as suggested by day 3). He did brilliantly. We heard a few squeals from him as we went to bed, I think we might have disturbed him, but after checking his covers and making him a little warmer, he slept soundly for the rest of the night.
So on Saturday morning, we were able to take his helmet off for an hour to give him a rest, as we are still in the process of building him up. We gave his head a good check over and found two red patches on the left of his head (over his ear), and one to the back of his head, each about the size of a 1p piece. So we kept an eye on them and in the end kept his helmet off for a few hours as the one on the back of his head took a long time to fade. Eventually when we were happy, we put lots of Sudocrem on the patches that had been red (as suggested) and also around his forehead and cheeks. Where we had been using Vaseline previously on his face, he looked like he was getting some pimples, so we have switched as maybe the Sudocrem is a little more breathable?
His helmet then went back on and stayed on until bath time. We had a lovely bath time on Saturday night, Noah is loving holding onto the side of the bath now and tries to pull himself up. So cute. We had lots of giggles as we played for about 20 minutes. After this time, we got him dressed, put lots of Sudocrem on again and then tried to get his helmet on. I don’t know quite what happened but I found it really hard and the first attempt went wrong, So we took it off and tried again. Poor Noah, he screamed so loudly and got very upset. It broke my heart. It is bad enough if he cries when he bumps his head, let alone to think that we were doing this to him. I ended up in floods of tears, so much so that Liam (my husband) took over, got his helmet on and took him to his room for milk. I was so glad he was there to do that as I don’t want Noah to see me getting upset about his helmet. I don’t want him to pick up on that as it just won’t help him. Once I had composed myself, I went and said good night. He was smiling away, and as always looked very comfortable in his helmet - it made me feel happier to see his grin.
It really is tricky getting his helmet on, you have to line up the front first, before getting it over the back of his head and into final position. On Saturday I was really struggling to get it around the back right side of his head, the area that is bigger. It is quite tough to pull the helmet open enough and Noah is constantly moving about (even sat in his Bumbo), it is a very tricky thing to do. I know it will get easier as Rachel at the clinic did it with ease!! We just have to keep going.
Again, he had a brilliant night in it - no squeals at all! So this morning, he had about a 20 minute break whilst Liam cleaned it and then wore it all day (including both naps) until bedtime. Today was his first full day. He seemed to be back to his old self. Chatty, smiley and shouty! He seemed less subdued, even though he is still very dribbly. He seems to be completely used to wearing it now.
Today we went out into the garden for a bit, Liam did
some exercise and I did a little gardening. We wrapped him up warm and
he played with some toys whilst watching us for about half an hour - all
the time, we knew his head was lovely and warm! When we came back in,
we took some layers off. It is still tricky to know quite how much he
needs on, but I think we got it more right today. He was defiantly less
sweaty when we took his helmet off tonight.
Noah had all his meals and milk wearing his helmet today. I was a little worried about how dirty the white foam layer might get especially at food times, but it passed the tomato based meal test today! I thought his might have really stained it, but by leaving it to dry and then rubbing it off, it left hardly any mark. I don’t want him to look like a scruff bag in it!!
So all in all, a good 3 days and when Granny rang this afternoon to check how our little astronaut was doing, I gave her the thumbs up! He is much more used to it and we are much more used to seeing him in it. I have gone from feeling sad about him wearing it, to feeling like if he doesn’t have it on we are just potentially adding time to the process. I defiantly feel much better and easier about it all now (apart from last nights blip!) and look forward to the day we can’t remember which side of his head was flatter. Whenever we take his helmet off, either Liam or I will ask the other “Is it ready yet!” - we can’t wait for the day the answer is “Yes”.
So all in all, a good 3 days and when Granny rang this afternoon to check how our little astronaut was doing, I gave her the thumbs up! He is much more used to it and we are much more used to seeing him in it. I have gone from feeling sad about him wearing it, to feeling like if he doesn’t have it on we are just potentially adding time to the process. I defiantly feel much better and easier about it all now (apart from last nights blip!) and look forward to the day we can’t remember which side of his head was flatter. Whenever we take his helmet off, either Liam or I will ask the other “Is it ready yet!” - we can’t wait for the day the answer is “Yes”.
The clinic have advised between 4 and 6 months as we have started treatment a little later. Like you say, each case is different and ultimatly we will make the decision when we want to stop. It would be nice to think he could be nearly there by the time he is 1 (end of May). The fact that his head grew 2mm in two weeks (between his initial consultation and his fitting) we are very hopeful.
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